i am other people and so are you

This is what you want to know: The surgery was text book, no surprises, and Ulysses is doing beautifully!

I’m sitting at his bedside in the picu, lulled into pensive sleepiness by the aquarium sounds of all those liquids dripping in and out of him. I have a bed reserved in the intensive care parents’ quiet room, and I should get over there soon.

Once Uly was stable this late afternoon, the husband and I snuck away to a restaurant a couple blocks away. We really needed to eat. Anyway, the server teased us, “are you texting sweet nothings to each other?” as we both were buried into our respective iphones. I looked around and realized we were surrounded by couples, dressed nicely and looking relaxed, happy. Valentine’s dates! She left before we could explain, but as soon as she was back to our table I blurted out, “we have a baby in intensive care at the hospital! he just had heart surgery! we’re messaging friends and family with updates!”

I always thought heart defects (if I thought about them at all, which I doubt) happened to other people. I’d been in an ignorant fog. Other people have babies with serious health issues. Other people have babies with limb differences. Other people go to pediatric specialists and worry about insurance lifetime maximum payouts. Other people.

But now I realize that I am the other people. Some other ignorant lucky bastard out there is me, before I had the life experience to learn that we are ALL other people.

It only takes a little time spent in a hospital to see that all types are represented. Every kind of family is here. And we’re all as out of place as we all do belong.

I could’ve passed tonight at the restaurant, I could have allowed the server to assume we were just employing poor date etiquette, with our technology all up in our faces and hardly any words spoken between us. But I wanted her to know because this is such a huge thing and because I want to represent what families with children with birth defects look like. Which is the same thing as saying what families look like. Like us. Like you. Like anyone. The more we talk about it the less anyone can dismiss the possibility as something that happens to other people. We are all other people. We are all just people.

And people!! You all blew me away today with your constant and true stream of kindness. Every comment, every text or message, would cause my phone to chime and even before I read your words (and I read them all, I did.) I would breathe deeply and smile. Love. I depended on that stream of love so much.

Ulysses will remain sedated and on the ventilator until tomorrow. I rub his head, stroke his fingers, fat from retained fluid, and tell him I’m here. That’s all I can do for now.

I’m very new to your blog (thanks to Miggy) but I so enjoy your humor and strength. I’m sure you’ve heard tons of “other people’s” stories, and I have one, too, but its not important, except as testament to the fact that you too will adapt, survive, and eventually thrive in your unique situation. We all do. It is what we were designed to do. Ulysses will overcome. I’m praying for your family tonight and just couldn’t help but try to make myself feel a bit more connected by replying to your post tonight.

April, I’m so glad to see your updates, really, I hang on each word and breathe a little more easily knowing that you are coming through (as I knew you would) this situation with as much grace, with as much humor, with as much of your sweet humanity in tact as anyone could.

I love you! Still sending the good juju out to you and Brian and the rest of the clan.

We are all just people, muddling through, but you are shining through and finding the moments of joy, it seems like.

I, too, found my way here via Miggy and her post on Monday. I am so thankful that your sweetieheart Ulysses is doing well after his surgery! My prayers for your sweet baby and you will continue. I am so glad to know about your blog. I have a special needs son myself. He is now 23.

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this.

"And since old Tom and the children could not know hurt or fear unless she acknowledged hurt and fear, she had practiced denying them in herself. And since, when a joyful thing happened, they looked to see whether joy was on her, it was her habit to build up laughter out of inadequate materials. But better than joy was calm. Imperturbability could be depended upon. And from her great and humble position in the family she had taken dignity and a clean calm beauty. From her position as healer, her hands had grown sure and cool and quiet; from her position as arbiter she had become as remote and faultless in judgment as a goddess. She seemed to know that if she swayed the family shook, and if she ever really deeply wavered or despaired the family would fall, the family will to function would be gone." - John Steinbeck, The Grapes of Wrath.